I Was So Wrong...

It started when Brian was a baby.  He was six months old when we decided to start trying for another child.  We still didn't know exactly what we were dealing with with Gavin (we never did find that out!), but we wanted to be sure that Brian had another sibling.  My mind kept racing towards the future - the day that Ed and I were no longer here.  I figured that Gavin would likely need care his entire life... and I didn't want Brian to feel alone in that.  And I also worried that Brian would feel lonely - if Gavin never talked or walked.  Boy, did we try for that other baby.  The old fashioned way... pills... injections... we even made an attempt with donor eggs.  Along the way we lost Darcy and many other babies who never made it to this Earth.

Giving up and moving on was a gut wrenching decision.  But when I knew it was time to stop - I knew.  And I felt pretty comfortable with that.  I was proud to finally be strong enough to walk away and wrote about it in one of my personal favorite posts called "Reclaiming Me."

But I still had those pangs - mainly when I looked at Brian.  As he progressed and Gavin trailed behind... as they started playing with completely different types of toys... I would worry.  About Brian.

But now Gavin is dead.

And I was so, so wrong.

As I lay in bed each night with Brian and we go over Gavin's "death day" in detail before I turn out the lights.

As I sit on the swings with him and, on his request, push the invisible "angel Gavin" in his bucket swing.

As he says to me, "I miss Gavin's laugh the most."  (So do I, buddy.  So do I.  Watch this little video and you will, too.)

As I watch him sleep in Gavin's bed.

As I well up with tears when he says, "Mama, remember when me and Gavin..." and recounts so many memories he has having fun with his big brother.

As I look in the rear view mirror when he says, "Mama - I miss Gavin sitting next to me.  It's lonely back here."

As I hear him talk to Hope in my belly, which he has started to do, and he says "You have two big brothers - me and Gavin.  Gavin died, but that's okay.  I'll be your big brother and I'll tell you all about Gavin later."

As I watch... and listen... I realize.

I completely and totally... 100%... underestimated their relationship.  I thought I got it.  I knew they loved each other.  I still thought another sibling would make things so much better.

But I was so wrong.

It was already great.

Cleaning And Scrubbing Can Wait 'Till Tomorrow...

Cooking and cleaning and can wait 'till tomorrow,

For my child died, much to my sorrow.

So quiet down chores, responsibilities can sleep,

I'm mourning my child because children don't keep.

Emails and snail mails can wait 'till tomorrow,

For my child died, much to my sorrow.

Don't care about makeup, my hair's going white,

I'm mourning my child who was taken in the night.

But there are some things that can't wait 'till tomorrow,

Even though Gavin died, much to my sorrow.

He left a brother - and sister, you see,

So life must continue how he'd want it to be.  

(But somedays, trust me, I long for yesterday and want to curse tomorrow.)

kate leong

five minutes ago

13 August 2013

Remembering Gavin...

Brian announced today that he wanted to sleep in his brother's bed tonight.  My heart skipped a beat.  Actually, my heart has been skipping many beats and pounding hard and fast and feeling like it's going to explode out of my chest twenty four hours a day... but that's my constant anxiety.  

I digress...

So, tonight after his bath, Brian and I started the difficult task of transporting all of his Angry Birds... and his "guys"... and his special blue blanket that matched Gavin's hospital blanket... and his Penguin that illuminates stars on the ceiling and he lovingly placed them in his brother's bed.  He even asked for the special pillow case that he got to pick out in Gavin's hospital room to cover his pillow.

Ed and I sat on either side of him, as we've done since we came home from the hospital, and I read him a very special book.  Brian's teacher (that I could explain with about 100 adjectives like amazing and kind...) adapted the book "Remembering Crystal" by Sebastian Loth into "Remembering Gavin."

We have read it, on Brian's request, every night.  Somehow I am able to get through it each time... even while hearing Ed sniffling on the other side.  

 What Laura did for us - and for Brian - is indescribable.  I believe this book is helping Brian process that Gavin is really gone.  File her gift idea in the back of your mind.  If someone in your life loses a child and leaves behind a young sibling, THIS is what you should send them.  This gift means so much to us.  I was so determined to share it with all of you that it took me FOUR takes before I could do it without crying...

After the book was over and we were about to cover him with his special "Gavin blankie," he suddenly remembered that he forgot one important thing in his room.  The heart that hangs from the "invisible string" on his closet door.  He ran to his room... brought it back... hung it on Gavin's closet door... and our hearts skipped a beat again as we heard him say, "Good night Gavin," as he gently tugged the string. 

 Please keep us in your thoughts and prayers.  Managing Brian's grief is our biggest priority - but navigating our grief at the same time can be very challenging.

Full Circle Moment...

Gavin and I have been home together all week, but today I took him to school for an evaluation.  He has been slowly getting evaluated by everyone from Speech therapists to Psychologists to Occupational Therapists... and today was his Physical Therapy evaluation.  They are all evaluating him to prepare for the upcoming IEP that will follow him into... gulp... Kindergarten.

I dressed him in his Sunday best for what was a full circle moment for the two of us...

Gavin's evaluation was done by his very first therapist EVER.  Miss Patty (on the right) came to our house shortly after Gavin came home from the NICU and she was with us for three years!  And soon, she will be Gavin's physical therapist when he starts Kindergarten in the Fall.  Miss Wendy and Miss Patty both work at the Kindergarten Center - which means that if Patty has any questions, Wendy is right there!!  How lucky for Gavin!!

It didn't take long for Gavin and Miss Patty to fall in love again.

 Some things just never change.

When I started thinking about Gavin's transition to Kindergarten, I really saw him travelling to school in his wheelchair - just as he does now.  But Patty and I both agreed that the wheelchair can be left at home.  I want him to walk as much as possible this year - and that includes up the driveway to the bus and off the bus into school.  So I'll be asking the bus company for a carseat.  How awesome is that???  And how quickly things change these days for our little superhero.  He is making progress faster than I can type!

In other news, I'm trying to get back into the piano.  I've been a piano player since the second grade... but I really haven't played since Gavin was born.  I used to teach piano to kids in the house before he was born, but it just went by the wayside.  Yesterday I pulled a book out of the piano stool and started playing... and suddenly I was the pied piper.  Gavin and Brian both came in to listen quietly - and soon Brian was asking if he could "have a turn."  

I often wondered if Brian would let me teach him piano.  Sometimes parents don't make the best teachers.  But Brian is showing so much interest and patience, it may just happen for the two of us!!  I'm cautiously optimistic.  

More and more I realize that Brian is developing a huge and tender heart.  Lately, when I pick him up from school, he has been coming out holding the hand of a classmate.  In the past, he'd come running to me when he saw me.  Now, he makes me wait until he safely deposits his friends at their Mom's car or their bus.  And THEN he comes running to me.  I love this!!

He's also gotten a lot closer to Gavin.  He looks for ways to play with him, include him, help him and read or sing to him.  Today he wanted to play "Firemen" with his big brother...

...and even turned into a therapist at one point.  Here he was instructing Gavin to "touch hat."  "This is a firehat, Gavin!  Can you touch hat?  Touch hat, Gavin.  You can do it!"

The funniest moment was when he called me into the room to take their picture.  "Here Mama - we'll pose for you!!"

You can't "force" a relationship to happen.  My greatest wish and my most fervent prayer is that Gavin and Brian will always have an unbreakable bond.  That Gavin won't get "lost in the shuffle" as Brian grows and gets busier and makes friends.  So, to me, seeing these moments is so emotional.  It just makes me so happy to watch my boys interact.  And it makes me happy to see that Gavin has had such an influence on how Brian views the world.

I feel so lucky to be Brian's Mommy.

I likely won't be on the blog until after the weekend!  My wonderful nephew, Dan, is getting married on Saturday.  I'm already starting to cry so it should be a long few days... trust me.  I am THAT Aunt.  I can already see him rolling his eyes at me.  *wink*

we-are-robots...

This morning, while Brian was at school, Gavin and I got down to business in day two of "Mommy Boot Camp!"  We worked on the communication cards again... spent some time coloring (reluctantly) at the art table... and I ditched the crawling down the stairs idea and started teaching him to WALK down.  Yes, walk.  And do you know what?  He actually handled that better.  Once Sara gets back, I'll get it on video.  It's definitely something you can't step back and videotape on your own!!

I took a few videos of Gavin walking, too, so you can see his progress.  He's doing such a great job.  Believe it or not, he's an even better walker in bare feet or socks with treads.  But take a look at these two videos...

When it turned 11:15 and I announced, "It's time to go pick up Brian from school!" I heard a big squeal.  Gavin was so excited that his little brother would soon be home!

Then, in a moment I can only call "inspired by Martha Stewart on Pinterest," I created a piece of art I called a "sealed circle fluffernutter sandwich" for Brian.  Would you like my recipe?

Get peanut butter.  As long as your child isn't allergic.  If so, find something else.  Like fake peanut butter.

Get Fluff.  Or use what I use:  Gluten Free Ricemellow.

Apply both liberally...because that's how you're supposed to do it.  You can't have too much peanut butter OR fake fluff.

Take a small circle container - press down hard - cut around the container - and you have a sandwich that won't "ooze" and drive your particular kid nuts (so to speak) that doesn't appreciate sticky fake fluff fingers!

Be honest - you're impressed, aren't you?  Could I make it on Pinterest??  Should I send this to Martha Stewart??

*wink*

Brian definitely approves!

As we sat at the table eating lunch, Brian said, "Mama?  Are we going to skip our rest today?" with a cute little tilted head.  He asks this question every day.  Sometimes, the answer is yes.  But today I said, "Not today, buddy.  Mommy's not feeling good.  I think we'll ALL take a rest."  He thought for a few seconds and then slapped his hand on the table, "I know!  How about you go take a rest and I'll take care of Gavin.  Then when you wake up, I'll have lots of water and tea down here for you to drink.  You need to drink a lot to get better."

He may have been angling to get out of his rest, but it sure touched my heart.  I love this child.

We did all take that rest, and when we woke up - as promised - Brian promptly filled up a cup of water at the refrigerator and delivered it to me.

The rest of the afternoon, we just played...and read books...and painted.  I took a video of Gavin and Brian 'playing' together that I wanted to share.  It's a little long (5 minutes!) but it gives you a great idea of how obsessed Gavin is with his little brother.  It shows how excited he gets - how much he laughs - and how he seems to understand some of the things he's told.  If you can spare a few minutes, I think watching this will make you happy!!

We ended the day in a non-typical way.  Usually, the boys and I have a dance party in the kitchen before dinner.  Today I decided - with my head pounding and feeling miserable - I felt more like a robot.  So robots we were.  

And we rocked it...

Mommy Boot Camp...

Last night I went to bed early with one thing on my mind - my plans for Gavin this week.  With Miss Sara away all week, I made the decision to keep Gavin home with me.  I am so grateful that I've been able to have a helper since Gavin was a baby, but I also relish the time alone when it's just the three of us.  And I am really looking forward to mornings alone with Gavin while Brian is at school.  I made up a schedule for each day and declared the week "Mommy Boot Camp!" 

My first order of business was to make some new communication cards.  I bought this Laminating machine a couple years ago - and it has more than paid for itself.  It's so easy to make picture cards for Gavin!

I placed the two books (his favorites!) in the clear bin with the card taped to the top.  He looked at it for about ten seconds...

Looked up as if to say, "Let me get this straight..."

...and then proceeded to touch the picture...

...pull off the lid himself...

...and pull out his book!  He was quite pleased with himself.  We did this several times throughout the morning.  He did a great job!  I also did it with other toys - had him touch the picture card to "request" it.

The two of us had a great time.  Well, except when we got to the physical therapy part of my schedule. Walking for therapy doesn't even seem necessary anymore - at least not at home!  He walks all over the house with increasing confidence.  I decided to push Gavin to crawl down the stairs.  It's something he always resists.  He can crawl up...he can walk up...he can get himself out of his bed by going backwards...but he just won't crawl down the stairs.  You put him on the stairs to go down...and he just wants to go up.  So that wasn't Gavin's favorite part of the morning.  But a Mom's gotta do what a Mom's gotta do.

I think his favorite part of the whole day was picking Brian up from school.  He love his little brother so much!!  On the way home, I told Brian about our morning and briefly shared the communication card experiment.  As soon as he got his coat and shoes off, he wanted to "do therapy" with Gavin.  Without me having to show him what I did, he instinctively (and sweetly) put the box in front of his brother and said, "Okay, Gavin, touch this picture to tell me you want your books!  Go ahead, Gavin.  You can do it!"

And then he waited.  And waited.  Reminding Gavin every ten seconds that he was still waiting for him to touch the picture.  I went back and forth between wanting to cry and wanting to laugh!  At one point, Brian even took Gavin's hand and tried to force him to touch the darn picture...

And just when he had all about given up hope - Gavin touched the picture.  And no one was happier and more encouraging than Brian.

Brian took a nap this afternoon while Gavin and I spent time reading in our "book nook" - or "book fort" I should say!  It's a pretty awesome hangout!

But, once again, I was chopped liver once Brian came down from his rest.  These two boys love to hang out together lately...and nothing makes me happier.  I couldn't capture it on video, but Brian was reading and singing to Gavin while they were in there together.  Gavin was so happy!

 Unfortunately, I woke up feeling sick this morning and I'm hoping it doesn't lead to anything too bad.  This weekend is my nephew's wedding out of state - I can NOT be sick for that!!  And, of course, I don't want the boys to catch whatever I have.  I hope it doesn't get in the way of my "Mommy Boot Camp!"  I have big plans this week for my little superhero and "ain't nobody got time" for being sick!!

p.s.... Don't forget to enter my Mattel giveaways!  There's an entry to win a deluxe basket filled with toys in the "Save The Bunny Giveaway" post - and an extra giveaway form on the Chasing Rainbows Facebook Page!  You can't win - for your child, your niece or nephew, your grandchild, your godchild - whoever - if you don't enter!!  

Dear You, When It Comes to Professionals...

I felt blindsided when Gavin was born. 

Not the "I expected a girl and got a boy" kind of blindsided.  Or the "I planned for a natural birth and had a C-Section" kind, either.  I felt blindsided because I realized rather quickly that I was out of my league.  With my own child.  He had so many issues and I had to rely on nurses in the NICU, doctors attempting to diagnose him and well meaning social workers trying to make things right in my world.

I needed all of them.

I hated all of them.

In the beginning, I expected so much from these professionals.  I hung onto every word - and then resented their every breath.  

Dear you,

I know what you mean about expecting people... expecting anyone!... to say the right things.  But I have bad news for you.  They never will.  Just like I said in my "about those friends" letter, no one will ever know exactly what you need.  You can tell your close friends and family, but you can't really do that with professionals.  You can tell your Mom or your sister or your friend, "Listen, it would really help me, emotionally, if you didn't say 'Wow - your life really sucks.' every time I tell you something about the baby's issues.  But you can't really say to a professional, "Listen, Doc. Can you hold my hand while you break more bad news to me about my child?"

But.  There are some things you CAN do.

When Gavin was an infant and I had to bring him to the pediatrician for developmental visits, the nurse would always run down her "typical" checklist.  "Is he holding a rattle?"  no.  "Is he making eye contact?" no.  "Is he sleeping?" no.  I would leave there in tears every time thinking, WHAT THE HELL??  Why would they ask me these things knowing that my child can only lay there and is CLEARLY not following the "developmental checklist."  I felt so defeated - and so hopeless about Gavin's bleak future. But they didn't know  - they were only doing what they were used to.  I know they didn't intend to crush my spirit or hurt my feelings, so it was hard to be upset with them.   So I took control. I brought in a typed up sheet for each visit listing "All The Things Gavin CAN Do" and asked them not to go through the checklist with me anymore.  They were so relieved - they had always felt awful asking me those questions.

For the rest of your life with your child, you will encounter lots of professionals with lots of advice and opinions.  I have a great, great respect for people who devote their life to helping our special kids.  Whether they are doctors, therapists of any kind, psychologists, teachers, personal aides or nurses.  I come from a place of trust - so I always assume that professionals come from a place of compassion and are well meaning.

That being said... you will need to get used to hearing things you don't like.  Getting advice that doesn't fit.  Hearing statements that rub you the wrong way.  Getting a suggestion that seems ridiculous.  Or  feeling offended or judged.  "How could that happen??" you may ask.  "Why would she say that?" you might wonder.  "Who does he think he is?" you might shout.  Here is the secret: they are human.

You'll encounter professionals that give you advice based on what they've learned from books. Or, very often people will bring what worked well with one family and assume it should work well with yours.  It's hard, but you have to imagine a filter in your brain and heart.  Take everything in with some nodding and smiling - keep what you can use - and disregard the rest.  I think most of the time people's intentions are good and they are trying to help, even if they're not helping at all.  Just appreciate their efforts internally and let go what pisses you off.  It will only hurt you if you hold anything against a professional (or anyone, really!) who isn't involved in your every day life.

It's critical to follow your gut.  The doctor treating your child isn't communicating well with you?  Find another.  Your child cries and cries when one particular therapist comes to the house - but doesn't cry for any of the others?  Find another.  The social worker assigned to help you isn't really helping you at all?  It really is okay to find another.  The worst thing you can do is to internalize things that people say or do.  And I think your biggest downfall in getting used to having a child with special needs will be expecting people to make it better with their words or actions.  They will fail you every time.  YOU have the power to change your perspective and your feelings - and YOU have what it takes already to know what is best for child.  It may not feel that way, but it's true!!  

The other day, a friend posted this quote on Facebook and I felt it really summed up my philosophy:

“If you don’t have garbage, you have nothing to use to make compost. And if you have no compost, you have nothing to nourish the flower within you. You need the suffering and afflictions in you. Since these feelings are organic, you can transform them and make good use of them.” ~ Thich Nhat Hanh

Having a child with special needs is not easy.  No one will every say that it is.  And you will have feelings of anger, resentment, grief and sorrow many times along the way.  Don't stay there.  Use those feelings to empower yourself into action.  The more positive YOU are about your child's possibilities... your child's future... your child's daily life... the more positive OTHERS will be, too.  I promise you this is true.  Take this blog for example.  I can make a fuss over something simple like this photo which, to any outsider would not be a big deal.  But because of this community I've created, everyone knows that this photo is a dream come true for our little family.  Seeing my two sons holding hands and walking together?  There's nothing like it.  And because I shared, people can celebrate that moment with me.  I can assure you - feeling the excitement of people over this photo empowered me as Gavin's Mommy.

And because I have created a space where Gavin (and Brian!) are celebrated and lifted up and encouraged on a daily basis, people want to join in and participate!  People love to be a part of positivity.  Create it - and you will attract it.  You'll see.  And you'll see a difference in your child, most importantly.  

Positive energy is contagious.

The professionals that will come into your life are people first.  Make sure they know your child.  Not just know the diagnosis or the features or the medical conditions.  Make sure they know your child.  Get them excited to see your child.  Include them in your child's great accomplishments so they feel like they are part of this great ride into the future.  

Just don't expect them to make it better for you.  Truly, the only person that can make anything better for you... is you.

With every good wish for a positive future, 

me.

That's Just Gavin...

The last couple days have been quiet around here.  Yesterday it was just the four of us.  Gavin, Brian, Me... and the GIANT cold that has taken over our house.  Everyone is sick.  Daddy, Mommy, Gavin and Brian.  As usual... and unfortunately... Gavin has it the worst.  He's been running fevers up to 101.3 both days.  I haven't panicked about him only because he's eating, drinking and active.  He sounds really awful though.  It's ironic that we'd come home from our visit to Washington National Medical Center with a cold.  The nurse practitioner, Meganne, and I discussed having Gavin add a Pulmonologist to his list of specialists.  When I told her that he has a hard time managing his secretions when he's sick (and coughing like he is now) she said I should try to get him a "Cough Assist Vest."  The pulmonologist would be able to help me accomplish that.  He has used these vests before during hospitalizations and I seriously wanted to try to fit it in my purse on the way out.  I'd be very excited if I could get one for him.  And I really wish I had one now.  Until then, the percussion I do on his back with my cupped hand to get him to cough will have to do.  It's hard for me to sleep at night as I'm typically glued to the monitor.  When Gavin's sick, his breathing is terrible - and his apnea comes right back.  I usually have to go in and suction him multiple times.  My tricks when he's congested are to smear Vicks on the soles of his feet and put socks on... leave the Vicks jar open on his dresser for added vapors... and turn a cool mist humidifier on low along with his heater on low.  I know I don't need to tell the Moms out there - taking care of sick children when you are sick is the pits!

Yesterday morning we had a visit from Orthologix!  They came to deliver Gavin's awesome new orthotics!  He is still wearing "Sure Steps" - but in bigger size and a new design.  We chose the Superman logo which was transferred onto the plastic molds.  I mean what else would we choose but Superman?  So all day yesterday and all day today we wore them two hours on, two hours off to break them in.  Come Monday he'll be good to go to wear them all day at school.  New and bigger orthotics means new and bigger shoes!  I immediately ordered four different pairs to try from Zappos - they ship free and I can return the ones that don't work for free.  I love when I don't have to leave the house and shlep kids and strollers and such.

Brian has been a remarkably sweet brother over the last two days.  If he goes to the refrigerator to get himself a drink, he gets Gavin's cup and hands it to him.  If Brian and I are reading or playing and Gavin wanders off into another room - the slightest cough from Gavin will send Brian running.  "I'm just going to go check to see if Gavin's okay, Mommy.  I'll be right back!"  And, when he usually kisses Gavin he freaks out when his face gets wet from his brother's drool.  But yesterday he gave Gavin a big kiss - followed by a hug that he forced on him - and when I asked if he wanted a cloth to wipe his face off, his response got me a little emotional.  "That's okay, Mommy.  That's just Gavin.  His face is wet a lot but I love him."

Some days I'm honestly not sure how I got so lucky.

Metamorphosis...

Sometimes a metamorphosis is obvious.

Today the boys were transformed from shaggy...

...to ultra hip and handsome!

Sometimes a metamorphosis is heartbreaking... in the best way.  I've been watching Gavin and Brian's relationship as brothers deepen and grow.  All day Brian wanted Gavin to stay still so he could give him a big kiss and a hug.

 Gavin finally gave in and made his little brother's day.

Sometimes a metamorphosis is literal.

Santa brought us a Butterfly Garden kit so we can watch the process of change from larvae to butterflies.

Right now they are caterpillars and have been spinning silk around themselves right in front of our eyes.  Brian is fascinated and can't understand how they are making themselves change.

He's too young for my philosophical answer - how we all have to make ourselves change many times during our lives.  I just stuck with "Ask your Daddy."  A much safer answer from me sometimes.

And sometimes a metamorphosis is brilliant.  It's a whole new beginning.  Yesterday I spent the day with my Mom and my sister, Bean, as we checked out what will eventually be my Mother's new home.  She's preparing to move to a wonderful retirement village nearby and we are all just thrilled for her.

This house was the only home I ever lived in before I got my first apartment.  I obviously have many, many memories from living there.  But as sad as it will be to leave... and as weird as it will be to someday see a new family move in to "our house"... I am so happy she is moving.

Watching my Mom's metamorphosis since my Dad died has been inspiring.  (But of course it was - we're Gallaghers and we all know how to rise from the ashes and walk on!)  She has handled herself with such grace during what had to be a heart wrenching first year.  Thinking of her moving to a new home where she can be surrounded by friends and activity and less housework... it makes all of her children so happy.  She can't bring the house with her - and she won't be able to fit all of its contents in her new place - but she can absolutely bring the thousands of happy memories that happened there because of her and my Dad.  They were the best "memory makers" for all of their children.  And she can leave that house with confidence that she created a happy, loving and stable home for five grateful children that didn't turn out too bad, the lot of them.